Tuesday, March 30, 2010


I'm typing this in the middle of the night from my TV room where I'm sitting surrounded by two puking little girls and a sleeping little (so-far-not-sick) baby boy. Every  now and then I get the background noise of Jeff hurling his guts out upstairs. This has got to be one of the grossest nights of my life. It stinks in here. It stinks upstairs. The washer and dryer are going, cleaning up bed sheets and a billion receiving blankets, wash cloths, and PJ's. I am afraid to eat in case it's my turn next. What is a safe option that won't come back

... okay, three pukes and a load of laundry later.

Kingsley is still sleeping. All is quiet from Jeff upstairs. Cordelia seems the worst hit. She started it all. Jeff and I were at the support group meeting when my mom called to tell us to get home ASAP.  On the way home, Jeff got the urge to purge.  Cor was chuffing when we got in and has been doing it every 10-30 minutes since.  Jeff joined in not long after. And just when Cordelia and I were settling on the couch and my mom was thinking about leaving we heard Rachel's frantic crying from upstairs.

I have no idea what it is they're suffering from. Cordelia is clammy and sleeps between episodes. Rachel is sitting here just fine, loving the attention and the cartoons (thank you 24 hour Treehouse!) until another round hits. I'm racking my brain to think of what the three of them ate that I didn't and I've got nothing. 

If I get through this without getting sick, I will be the happiest mama in the world. I can think of one time I've thrown up from being sick in the last 20 years. This is just disgusting.

Note to self: never buy cheese strings ever again.

Sunday, March 28, 2010


I have this odd fascination with pregnancy fliers and signs and such regarding folic acid. I have no idea why, but I almost feel giddy when I see one. I have to read it. It's quite odd.

Yesterday, Kingsley and I were at Shoppers Drug Mart refilling one of his prescriptions and I found myself staring at the wall of pamphlets. At least half were for pregnancy or childhood.  There was a whole row on "Folic Acid and Pregnancy."  And *woosh* there was that odd feeling in my stomach as I tried to discreetly snatch one off the wall. Why do I have to be secretive about it? It was full of "may prevent" and "could help reduce" and "talk to your doctor" with a few "before you are pregnant"s tossed in there.  I guess I'm always half hoping to find the one that says "will prevent" or something like that so I can yell: "LIAR!!! You are WRONG!" and tear it up in the middle of the store or doctors office or wherever I score some paraphernalia to feed my obsession. It's so disappointing to read the cautionary tales that it will only reduce the likelihood or lower the chances.

This pamphlet yesterday had another warning on the back. It talked about taking a higher dose of folic acid if you have had a previous pregnancy with a neural tube defect or if you are related to someone who has a neural tube defect such as a sibling, parent, or cousin. Sibling or cousin.  My poor girlies. I have two girls and my sister has two girls. As if The Talk wasn't going to be awkward enough, now Kristin and I have to add in the cautionary tale of birth defects in with the STD's.  "Here's a box of condoms and massive bottle of folic acid. Stay safe!"

And just for future reference: if you ever meet a woman with  baby with SB, don't bring up folic acid.  Chances are we took it and asking about it will get a nasty stink eye shot in your direction... at least from me.

Friday, March 26, 2010

Big Smiles

Kingsley smiled today!!  At me!

He smiles all the time, usually when he's half asleep, either coming in or out of a nap. He smiled at me once in bed, but I think it was a fluke. 

Bu today we were sitting on the couch doing yoga together and all of a sudden he just looked at me, right at me and just stared. And we just sat there staring at each other for a bit and then *bloom* there it was. He just lay there grinning at me until I scared him with my shrieking and tears. It was so beautiful! He did it two more times while we were playing. Is there anything better than baby smiles? I think not.  He was wide awake and smiling. Oh, heaven. :)

Thursday, March 25, 2010

Panic and Pedicures

The signs of a shunt malfunction are ridiculous, have I mentioned that? In a newborn I'm supposed to watch for excessive crying, excessive sleeping or lack of sleeping or eating or acting unusual or vomiting, head growth, sunset eyes... all but the last two are pretty standard for babies!! And apparently even rapid head growth can be normal, if you're my child.  I am generally not a panicky type of mom either. My mom freaks out and makes wild faces if one of the girls so much as stubs her toe. I sit back and wait.  My first thought when reading the list of symptoms was: "Crap. He's doomed!" because I would likely brush off any of those things if I wasn't otherwise warned. Well, they eye thing might freak me out a bit.

Yesterday, Kingsley slept a lot. He slept 3.5 hours in the afternoon, then I put him in the Snugli for a walk and then made dinner with him in the Snugli and he slept the whole time - nearly 5 hours. So, I panicked. Because that's what I'm supposed to do, right? And I'm trying to get better at the uptight parenting thing. Poor kid, I was prying his eyes open trying to see if they were 'sunset' (looking down).  Turns out that's kind of hard to tell when they are fighting you and squeezing their eyes shut! He eventually woke up and was acting completely normal.  Any other baby and I would have been rejoicing at having all of that free time to get stuff done, especially when it meant I had 2 sleeping kids for the afternoon (and I did have a clean house because of it!), but sometimes SB just sucks the fun out of everything.

Today though, has completely made up for the panic. :)  My friend took me and another new-mom friend of ours out for mani/pedi's while Rachel was at preschool and Cordelia was at library group with my mom. I haven't had pretty nails in months! We tried going to a fancy spa up in Masonville, but were shut down. Apparently they are not new-mom friendly and we were told to come back sans babies!  We ended up at a cheap nail salon where the estheticians were delightful and coo'ed over the boys. The baby boys were perfectly well behaved and complied with our pleas to stay sleeping and/or quiet while we were pampered. We've decided that we must make this a monthly outing.  Then I danced with my little strawberry headed one year old to really lousy kid-versions of pop songs and made incredibly chocolatey cupcakes with my grown up four year old. And Kingsley has been sleeping for most of it. Until Cordelia tried to put a bandaid on his head. Turns out he wasn't in that deep of a sleep after all.

Sunday, March 21, 2010


The Paralympic Games closed tonight. Not a lot was televised on Ontario, but the Closing Ceremonies were. I still have the Olympics website bookmarked so I've been tracking the medal counts and Canadian winners.

Watching the Closing Ceremonies though is giving me serious anxiety and I'm not sure why. So many wheel chairs?  I've searched down the list of all of the Canadian sledge hockey players and 3 of them have spina bifida. No sorry, they "Suffer from Spina Bifida." Who the hell wrote that? Seriously, are they suffering? No really, are they? They looked pretty normal in their photos though. They weren't writhing in pain. Maybe they weren't suffering right then. My sweet little boy is purring in his sleep right now and it doesn't seem like he's suffering. What do I know though?

Another thing on TV tonight is all the talk about the American health care reform stuff. I don't know much about what it means because I don't tend to follow American politics that much, but I hope it's good news for the SB kids out there. On the forums there is always talk about insurance companies and the different treatments that kids do or do not get, the cost of assistive devices, etc...  I am so thankful that I never have to think about that sort of thing. We didn't bat an eye at the bazillion ultrasounds or the MRI while I was pregnant.  His birth, his surgeries, his follow up. The trips back to the hospital for more head ultrasounds, the trip to emerg to meet with neurosurgery again. We pay for his meds, in theory, but I have benefits through work so that's all covered as well. His catheters are paid for. Social work, support groups, physiotherapy, urology, neurosurgery, the clinic, the paediatricians, orthopedics, home visits from nurses. ... all right there, no paperwork, no bill, no phone calls. They all found me, too, I didn't even have to track anyone down and ask for services.  If/when Kingsley needs orthotics or a walker or wheelchair or whatever else he needs, we won't have to pay for that either, at least not entirely.  Apparently there are huge flaws in our system. I haven't found them yet, personally. There are waitlists for some services, yes. We are waiting for the Home Visiting Program for Infants, but it'll start in a month or so.  We're so well covered with all of the other professionals though, I wonder what they'll even be doing! Most days I am just so incredibly greatful that I live in Canada.

Saturday, March 20, 2010

Birthday Madness

We had our first big family event as a family of five. Amazing how it takes 2 days to clean the house and prepare everything for a 2 hour event that takes another 2 hours to clean up from. It was worth it though. :)

Her birthday yesterday started with presents on our bed. Kingsley was lying beside us watching and Cordelia was right in on the action. The highlight gift was a Baby Alive doll she had seen advertised on Treehouse and was asking for. Stinkin commercials. Cordelia was in love.
I also got Rachel a mai tei for Rachel to wear her dollies and Cordelia has claimed it as her own already too.
Rachel asked for a 'surprise party' today for her birthday, so I didn't tell her what we had planned. We went to Once Upon a Teacup for lunch (I LOVE this place) and met our friends Molly and Gail. Cordelia didn't want to dress up, but Rachel was in heaven as usual. When he's older, Kingsley will get to dress up like a prince! Or a King ;)
Later, while Kingsley napped, the girls and I had ice cream on the porch and then had our first barefoot in the grass moment. Cordelia wasn't too keen on it, but Rachel would've stayed out there forever!
Today was her party.  The kids were awesome.  We had a chocolate fountain and cake for dinner.
That's it. Life is SB-drama free and I like it that way. We're watching New Moon now. Jeff is snuggling with Kingsley. He insisted we get this movie and is now complaining about how boring it is. My only comment was that Jacob takes his shirt off a lot. Apparently that's only entertaining for one of us. ;)

Thursday, March 18, 2010

My Baby is 4

Rachel is turning 4 tomorrow! I wonder if my mom sits there on my birthday thinking: "Holy crap! My baby is 32!" or if this will stop at some point. At what age does the amazement wear out a bit? Will there ever be a birthday that I don't reminisce about the emotional roller coaster of a birth day?

I love birth days - the days my children are born.  Nothing beats those days. Rachel's birth was so amazing because she was my first. So exciting and scary and painful and amazing all at once. I had an epidural, which I later regretted. The whole thing was done with in about 10 hours.  What a rush, getting to hold your newborn baby. Such a high!

Ugh.... I want to do it again!! :)

Anyway, my big girl has picked up a new hobby: photography. Some are quite artsy, like this one of our horrendously tacky ceiling fan in the kitchen:

I love this one of Cordelia although I have no idea what was going on when she took it. She tends to just steal my camera and wander around the house taking random shots.
I found a whole series of pictures on my camera of Kingsley on couch insterpersed with pictures of Roll Play on TV. I think it must've been when I was getting Cordelia up from a nap.

Cordelia absolutely adores Kingsley. She calls him Kiki! She'll run in the room in the morning yelling: "My Kiki!!" It's awesome.  Both her and Rachel are so into babies.  Rachel is getting a new one tomorrow but she doesn't know it yet. Cordelia also mothers her babies. She doesn't feed them like Rachel did when Cordelia was born, but she carries them, kisses them, rocks them, adores them... Her latest thing is getting me to wrap her dollies into her blanket and tie it to her like a sling.

And the weather here has been lovely the last little while. Things have just been nice all around.

Monday, March 15, 2010

The Family and the Blog

One of the first things I panicked about when we found out about Kingsley was becoming the Special Needs Family.  I did not want to be one. I have been working with children with special needs for nearly 20 years now and in that time I've seen a whole bunch of families. They can be grouped into two groups: the Special Needs Families and the rest. The SNF's are the ones whose lives seem to revolve around the diagnosis, the SN's child, the treatment, and the label. Their other children take a back seat, their lives take a back seat. Every conversation somehow reverts back to the diagnosis. When you meet them, whether their child is there or not, they will somehow manage to mention their SN child and the diagnosis. They are exhausted by it and you get exhausted talking to them about it.

The other families somehow find the balance. You find out about their SN's child in a more natural way, if you find out at all because if you aren't discusing something relevant to the diagnosis, it won't come up. It's not that they're hiding it, they just don't wear the SN's hat and banner on a daily basis. They remember that they have other children and are able to make time for them. They find a way to advocate for their SN's child and then have drinks with their girlfriends in the same day.

This whole world is new to Jeff, so I think he thought it was a little weird when I brought it up, but I think he sees it now. I don't want our family to revolve around Kingsley. I want our family to revolve around our family.

Says the mom with a blog about Kingsley. Haha.


Segue into the other topic ;)  There's this other blog that I was introduced to when Kingsley was about 3 weeks old. I've mentioned it a few times on here, but I'm not sure if it's a blogger faux pas to mention another blog? I will anyway, since I think half the world has already read it and the other half should because it's fabulous. It's written by a woman named Kelle Kelle's Blog  She had a baby exactly one week after Kingsley was born and when her daughter was placed in her arms Kelle realized she has Down Syndrome. Since then Kelle has been going through the usual things a new mom would go through when that sort of thing happens. Except she's so much better at expressing it than the rest of us! And she's a photographer, so the pictures are phenomenal. 

I have gotten my sister hooked on Kelle and twice now she's called me and told me to read her blog ASAP because sometimes it's like Kelle and I are going through the exact same thing. She freaks out about the future, I freak out about the future. She doesn't google DS, I don't google SB. She was afraid to meet a family with a baby with DS, I was afraid to meet a family with a baby with SB (then we both did and were very glad we did it).  I imagine that this is not shocking since we both had babies at the same time and all of that. But sometimes when I'm freaking out about SB and I avoid all other SB-mama blogs or SB forums, I can still go on hers because it's not SB but it's the same thing. Just another mom trying to find out how on earth to make this work without being sucked into the SN's vortex. I think it's that her blog started years before Nella was born, so there it is right there that she was a normal mom before Nella was born, and she's still herself afterward. She hasn't changed and become someone completely different just because she now has a daughter with DS. It's changed her, for sure, but it hasn't changed who she is. If that makes any sense.

So read her blog too, but only if you remember where you found it ;)  I wasn't kidding when I said half the world has read it - she's going to be on CNN tomorrow because of it! Nella Cordelia's (great name, eh?) birth story is where most people get hooked. Have tissues. Nella Cordelia's birth story

And on that note, here are my kids being normal kids doing normal things.  :)
Rachel wanted to be pink today. Mission accomplished.
This is Ballerina Baby. Known before today as Nudie, but then we found her clothes.
Kingsley hates tummy time. I think this is pretty universal. He does a lot of one-eyed stink eyes when you try to get him to do it.
I have still not figured out how to get them to look without hands on their faces.

He sleeps with his arms up, just like the girls did. What an angel. 

Friday, March 12, 2010

Two Month Check Up!

I can't believe King is 8 weeks old! I also get the feeling that I'll say that just about every Friday until I lose track of the number ;)  What an angel!

He had his 2 month check up this morning. I got parking! LOL, oh, it really is the small things that make me happy! He's up to 13lbs 3oz which is up 13oz in one week (insert joke about fat content in breastmilk).  I asked about his gagging because I'm so paranoid about the Chiari acting up, but she said we can't really tell. It's another one of the mama-instincts being all messed up. If it were the girls, I wouldn't bat an eye at my baby gagging every now and again for no apparent reason. But because it's Kingsley, I get paranoid. I don't even really understand what the Chiari Malformation stuff means or could potentially mean... I just recall reading about feeding issues and gagging. Clearly, he doesn't have feeding issues right now ;)

I also asked about him wanting to turn his head in one direction only and about not being able or not wanting to put his head straight when on his back. She said to try and get him to look both ways and to get those wedge things so that he can sleep on his sides.  As for the straight thing, she said not to worry, it would balance out when he sits and has better head control.  I'll ask our nurse next time I see her.  I'm oddly paranoid about his head shape.

Finally, Kingsley got his first shots. It was weird for two reasons: first, my regular GP wasn't doing it, so I didn't have the usual joking about vaccines and autism (he knows what I do for a living and likes to tease at vaccine time).  It's odd being with a different doctor! Sort of feels like cheating, like when I went to the midwives at the start of King's pregnancy instead of my OB.  The other thing was that Kingsley didn't get upset about them, not even the second one. I am all paranoid about feeling in his legs now, despite the fact that he moves that part quite well. His Dr. said she's sure he has feeling there, he's just taking it well. Maybe. I mean, Rachel took her shots pretty well, usually. Cordelia turns into a shreaking banshee everytime the nurse came in the room, the poor thing. I guess I should just be happy that he's not freaking out or in any pain, right?

Oh. And the receptionist there kept calling Kingsley a girl, right up until his diaper came off, despite my constant corrections that HE was doing well and HE doesn't seem to have any problems today.  Really? Am I that naive to have never considered that people would think Kingsley was a girls name, or does this surprise anyone else?

Thursday, March 11, 2010

The Talk

I know, it's so faux pas to talk about, but I've been thinking a lot lately about the talk that the doctors give you after they give the diagnosis.  For those of you who haven't had the pleasure of going through it, most (all?) doctors seem to want to convince you to abort your baby. It's not even like they're offering you options or just kindly reminding you that they can help you out with that if you want to walk down that path.  They tell you that they can set it up for you, tell you what a poor quality of life your child will have and then they tell you again that they can set it up.  They imply that it's the kinder option for your child. 

It came up again this past week at our support group meeting when another couple described their experience which was so similar to ours - not wanting to put the referral through to neurosurgery, not wanting to discuss the SB clinic or what happens once the baby is born. Just counting weeks and saying they should think about it. And maybe rethink it. Or take some time, because there is still time.  It comes up on the online forums as well, everytime some poor woman starts a heart wrenching thread after just receiving the diagnosis and wondering if the doctors are right about their child.

It's frustrating. Spina Bifida is the most common birth defect, and yet most people have no idea what it is or have any experience with it.  A big part of that is likely due to the birth rates being so much lower than the diagnosis rate.  All those poor misled parents out there who have been led to believe that their child is better off not being born just break my heart.

All that being said, I do still find it interesting when people say that I'm a strong mother for having chosen to have Kingsley.  Where was the choice? For us, it wasn't an option. They may as well have asked us to knock off Rachel or Cordelia. Kingsley was part of our family already; I knew his little personality, I could feel him living. There's not really anything they could've told us that day that would have changed our minds (Yes, OUR minds, Jeff was right there with me the whole time).

I don't know why I keep thinking about this lately.  It's not even something I need to think about ever again!  I just get so frustrated and angry and annoyed everytime I hear about another mother going through what we went through. It's just about the worst day an expectant mother could ever have, and the talk is just the rotten icing on the nasty cake.

Wednesday, March 10, 2010

Picture Day!

I've been lazy with my picture uploading. I even dug out my new(er) camera (that I sort of broke when it was 6 weeks old) and took pictures with it, but I'm too lazy to remember where I put the cord for it. I vaguely know... 

Anyway, so as I said, Kingsley is porking out. He's now a couple pounds lighter than my 6 month old niece. Which doesn't say much since my sister produces dainty little babies compared to my little piglets.  Here's my chubber in the bath:
The rolls on him! I'm finding that yucky stuff hidden in his folds. Usually at awkward moments when I'm showing him off to someone.
The chub is overtaking his incision. It no longer looks as straight bc he has blobs of fat distorting it. Seriously, it's so cute. And it's healed so well, I've got him wearing pants!! But those pictures are on my other camera, so here for my sister is Senator Kingsley! ;)
Aw, it's a good look for him. Unfortunately, he seems to have the same cowlick (sp?) that Cordelia and I have and his hair does not want to stay like this.
Remember my terrible day when I was trying to do yoga? Here's my little imp that morning, socks off and ready to go.
King was really impressed with Rachel's insistance on having Marlee in the shot.
Loving their favourite baby.

It was my birthday yesterday. On Sunday our parents came over for dinner. Turns out fondue is not great with little kids.
My pregnant daughter.
The girls adore him so much it gives me chills sometimes.
And how could you not? This face makes me melt.
Helping out with tummy time.

In addition to pants, I've started wearing him a lot now. It took me ages to feel comfortable, despite what the dr's keep telling me. In the end, I've decided I'm most comfortable with him in the cheap Snugli over my favourite Mei Tai. He'd be frog legged in the MT and since I'm not sure about how much of his feet he can feel, I'm paranoid that his feet would be in a bad position but we wouldn't know it. At least in the Snugli I know nothing is being cramped or cut off (his hips are fine).  As soon as he's big enough to have his feet down in the MT, I'm switching! The Snugli is no friend to my back.

Kingsley has a paed appointment on Friday. He gets his first shots. Great fun.

Monday, March 8, 2010

Laughing and Growing

Things seem to be normalizing again.  It's hard to get too down when you have such beautiful kids surrounding you on a daily basis. And despite how it sounded in my previous post, Cordelia is not usually a nightmare! She's a sweet little angel, I swear, and as soon as you meet her you fall in love. 

Rachel has also been entertaining me lately. Both girls are obsessed with babies, as most older siblings are when a newborn arrives in their home.  They both have dollies (Marlee and Carlie) that they drag around endlessly.  Rachel even stripped hers and tucked the baby into her shirt today, declaring that she is pregant.  It's a girl. She feeds Marlee with a bottle and when I asked her why she doesn't just feed her mommy milk, since I wasn't sure where she got the idea that babies drink bottles, she looked at me significantly and said that she wasn't as big as me, so she can't give her mommy milk.  LOL!! How do I argue with that?

Marlee is a Cabage Patch Doll. For those of you familiar with CPD's you know that they have that sewn up little bum.  She insists that it's a boo-boo just like Kingsley's.  She also helps Marlee pee and finds random items that she can use as catheters.  Every other sentence begins with, "When I was a baby...." including, "When I was a baby you had to help me pee," and "When I was a baby I had three boo-boo's, too."  I try to explain to her that Kingsley is unique and that not all babies are born like this or need help peeing, but she doesn't really get it.  I haven't labeled it as 'Spina Bifida' yet. I'm not sure why. As he and she get older and it matters more, it'll come out.

My poor Rachel, she also says things that stab me in the heart sometimes. On Friday morning, the day after we had gone to the hospital for Kingsley's shunt scare, she crawled into bed with me, crying.  She asked if I was leaving again to be in the hospital with Kingsley.  I wish I never have to leave the girls again to be in the hospital with Kingsley, but unfortunately it'll happen again sometime.

And Kingsley! In the excitement over him being healthy, I forgot to mention that he's up to 12lbs 7oz as of Thursday.  The little porker has gained almost 5lbs in 7 weeks, so I guess it only makes sense that his head get some of that. He's out of his 0-3m clothes, which is exciting for me! New clothes!  I love change overs in wardrobes.  It's a little sad that he only got to wear his 3m stuff for a mere 3-5 weeks, but change is good. I'm trying to figure out if it's okay for him to wear pants. It'll be another milestone! How odd that so many of his milestones revolve around wardrobe! ;)

Friday, March 5, 2010

Shunt Scare Number 3

Remember Kingsley's spectacular spit up on the swing yesterday? Well, he did a repeat performance today (into my basket of hats/scarves/mitts!) in front of my mom. She freaked out! Apparently seeing the exorcist-slash-baby in action was not something she thought was normal. So, I begrudgingly called our neuro nurse and left a message letting her know that his head was now up to 39.5cm (34cm at birth, 36cm 4 weeks ago) and that he had some projectile spit up. She called back just after 4pm and told me to bring him into emerg.

Well... Kingsley usually cluster feeds between 4-7pm and today I was not allowed to feed him, just in case.  Jeff and I hung out in the Children's emergency department for 3 hours with our poor little boy who was beside himself with hunger. So hard! And of course the whole time I'm trying to see if his eyes are tracking, obsessively rubbing his head to see if anything is bulging, and trying to prepare myself mentally for the idea of him having a revision.  Holy. Shit.

Just after 8pm, our neurosurgeon arrived and did a quick head ultrasound which immediately showed two little ventricles and a nicely working shunt. YIPPEE!!!!! I lifted my shirt and Kingsley chomped on like he hadn't eaten in days. Two minutes later his eyes were shut and he was purring away. I love baby noises. And it was all worth it because I can breath easy for one night, absolutely positive that tonight is not the night he needs a shunt revision. :)  Siiiiiiigh. 

Wednesday, March 3, 2010

Well, today sucked.

I think it was inevitable. One of those days that you just feel brewing deep down somewhere and you can keep it there only so long before it just explodes... and something sure did explode. All over the chair, the swing and Rachel.

I just wanted to do some yoga. Kingsley was dozey, so I put him in the packnplay. Then I set out a mat for the girls and one for myself, took all of our socks off and put in the DVD. The DVD was awesome! It featured music by Krishna Das which is my favourite calming music.  Anyway, that lasted about 10 minutes with Cordelia climbing all over me and under me and Rachel deciding she'd rather just watch or dance by herself. Then King woke up screaming. While I was feeding him, Cordelia climbed up on the pub-high kitchen chairs and started pulling the table cloth while Rachel screamed out the play-by-play of what was falling. Then I put him in the swing, rescued Cordelia and hit play again. About 2 minutes later, Rachel was yelling again to let me know that Kingsley was puking milk on the chair... and the floor... and her. With every swing of the swing, he would let another mouthful fly. Quite impressively, he didn't get any on himself. I grabbed a towel and started cleaning, putting him back in the packnplay.  Smart, Jill. So, while he finished spitting up on himself (sigh), Cordelia took advantage of the open cupboard (from when I got the towel) and ripped open a bag of rice cakes which got all over the kitchen.  I swept up the mess, then got Kingsley some new clothes and while I changed him, Cordelia got out a stool, climbed up into the craft bin and dumped the bag of sequins and little googly eyes and whatever else Rachel can glue all over my recently-vacuumed carpet. UGH!!  And on and on and on for the next 3 hours until it was finally nap time. 

So, somewhere amongst all of this fun, I started having the gloomy thoughts.

I think it starts with the appointments, which are about the only reason I get to leave the house these days.  I've had my 6wk appointment, the support group, and then today the uro.  It's like someone is poking me in the back over and over whispering, "Your son has SPINA BIFIDA. Your son has SPINA BIFIDA. Your son has SPINA BIFIDA..." when all I want to do is plug my ears and say, "Hey look! He's cute! He's normal! He's doing so well, I swear! That other pesky thing doesn't matter!"  And then we had two other non-SB appointments where I had Kingsley with me and then when we casually mentioned his diagnosis, things got weird. And again, I felt like holding him up and screaming for them to look at him and see how adorable he is and not at all freakish. 

Then I realized I never leave the house unless it's something kid-related or with a kid. Or two. Except we have two fundraisers to go to this week. Whoopee!! For those of you married to boring lawyers, you'll know how loaded with sarcasm that whoopee is. Bad food, boring small talk, work chatter, and people my parents age. These are my big nights out.  I would suddenly come down with some unexplained illness, but Jeff just informed me of the absolute ridiculous amounts of money (that we don't have) that he paid for the tickets to these wonderful snoozefests.

You stay at home moms out there will understand the frustration of doing it all solo as well. Yeah, I know, it's only been 5 days since the nanny left, but it's more than just that. I literally cannot remember the last time Jeff got home before dinner got on the table. And I can count on one hand (actually, one finger) how many times he has even been home for dinner at all in recent memory.  He thinks he's on the fast track to canonization if he is home to help put the girls to bed, but will bitch and moan about needing time to relax when he first gets home and so shouldn't actually *have* to put them to bed. But of course he also can't cath Kingsley then because he doesn't like doing that either. The hours between 4 and 9 are a nightmare. Without fail, Kingsley will wake up between 4 and 5pm and want to nurse. And nurse. And nurse.  Then we get action like this morning where I'm tied to the couch and Kingsley while Cordelia manages to find every little thing I didn't even realize I should have blocked from her. And Rachel will find some reason to be traumatized with life, usually because dinner is so terrible and not at all her favourite.  At least one of them will be crying at all times.  I don't get to eat dinner in more than 3 bites, and it'll either be smoking hot or cold, but never in between. And then while I'm feeding Kingsley again, Cordelia will toss her dinner everywhere and Rachel will cry.  Sometimes Jeff will come home at this point and ask why I'm such a grouch all the time. Then Kingsley switches from cluster feeding to gassy screaming right about the time I am trying to get the girls into bed.  When the gassy screams go away and I have had a moment to gaze at my gorgeous sleeping little angel, I then have to get him ready for bed.  Dressing Kingsley always brings the irritating poking again when I put his little limp feet into his sleeper.

My mom has also pointed out that he doesn't smell like a baby. Or in other words, he stinks. He poops pretty much as soon as you change him. 

And for some reason people keep thinking Kingsley is a girls name.

So, that's the end of my big long whine. Time to clean the kitchen and cath the babe.


I feel like since we found out about Kingsley's diagnosis everything has been a big waiting game. We had to wait to get tests, wait for the results, wait for more information, wait for another test, wait for birthdates, wait for birth, wait for assessments, wait for a go-home date... And now that we're at home it's no better. 

The easy - and annoying - waiting is at all of the appointments. I get it. Doctors are never going to be on time. It's just incredibly frustrating when you are stuck going to appointments nearly every week. In small doses, it's bearable. This often, with a newborn, it is making me crazy.  King had his long awaited urologist appointment today. We waited for 1 hour in this clinic room at the hospital. Then they called us in and we waited another 20 minutes in the assessment room. We saw the doctor for 5 minutes, and he didn't even look at Kingsley, just asked me a few random things. Then we waited another 20 minutes to schedule his follow up.  Awesome.  His paed has had at least 30 minute waits each time we've been there, and that waiting room is full of sick kids. :(  More waiting at the OB, and still more at the neuro's. 

And then there's the big wait. We waited so long for Kingsley to be born to get the answers to the big questions: will he need a shunt? will he move his hips, knees, ankles, feet? will he need to be catherized? So far, blah blah blah. Sometimes what you're waiting for isn't what you wanted it to be and that's even worse! Jeff and I prepared differently for this, where I was realistic and he was ridiculously optimistic, so when we got the answers it wasn't a surprise to me, I was prepared and it was exactly as I thought: he needed the shunt, he can't fully move/feel his feet, and he needs the cath. I knew this was coming. I just wish for once I'd get a big cheerful surprise - oh, look! He doesn't need the catheter after all! And his feet DO have sensation, yea! And his shunt isn't actually necessary!  None of the professionals have that encouraging optimism anymore. It's just explaining reality and reality sucks. 

So, now we just continue to wait. I'm waiting for his shunt to malfunction. It's like a ticking time bomb that I'm just waiting to go off.   We're making summer plans - is that when it's going to happen? Or the weekend of one of the girls' birthday parties? Or his first Christmas? How many times will we be in the hospital in the next year?  I try not to think about it but it's just always there. 

And we have to wait for services. It's not nearly like the poor families I work with who wait years, but it's still keeping us in a holding pattern.  Eventually we'll get home services to follow his development, physio, the further urology assessments and answers, waiting for the SB clinic... and whatever other services I can't even remember right now! Whatever they are, we don't have them yet!

I. Hate. Waiting.

I need that crystal ball that will just give me a little hint that will tell me it will all work out and things will be fine.
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